Day 13 (Tue, 18 April 2006): The good news is that Papa will be able to bring me home tomorrow. I am so looking forward to that. So is everyone else apparently. Papa says that my cheeks will be red & rosy by the end of the week.

It has been so dark and wet today.

Mummy dearest, I love you and I miss you. I knew more about you in the darkness of the womb: I could feel your loving caress, I could hear your beautiful voice and melodies drift through the walls of your stomach. Then why now though I am surrounded by light, can't I see you?

Stop all the clocks, cut off the telephone,
Prevent the dog from barking,
Silence the pianos and with muffled drum
Bring out the coffin, let the mourners come.

She was my North, my South, my East and West,
My working week and my Sunday rest,
My noon, my midnight, my talk, my song;
I thought that love would last for ever: I was wrong.

The stars are not wanted now: put out every one;
Pack up the moon and dismantle the sun;
Pour away the ocean and sweep up the wood.
For nothing now can ever come to any good.

I find an old photograph
and see your smile.
As I feel your presence anew,
I am filled with warmth
and my heart remembers love.

I read an old card
sent many years ago
during a time of turmoil and confusion.
The soothing words written then
still caress my spirit
and bring me peace.

I remember who you used to be
the laughter we shared
and wonder what you have become.
Where are you now,
Where did you go,
When the body is left behind
and the spirit is released to fly?

Perhaps you are the morning bird
singing joyfully at sunrise,
or the butterfly that dances
so carelessly on the breeze
or the rainbow of colors
that brightens a stormy sky
or the fingers of afternoon mist
delicately reaching over the mountains
or the final few rays of the setting sun
lighting up the skies
edging the clouds with a magical glow.

I miss your being
but I feel your presence,
In whatever form you choose to take,
however you now choose to be.

Day 12: Big day! That's what papa called it. He said that Uncle Simon had told him that he would let me go home in the next few days. My papa had to learn how to take good care of me first. So papa and a few of my aunties were in the hospital the whole day. They were learning from the nurses how to mix my special milk and how to feed me properly. Papa went home very tired today.

All the icky things stuck inside my body are gone! The poking metal thing in my hand is gone. So is that horrible thing sticking into my tummy. They were all removed last night. I love my nurses. I feel nice today. My antibiotic medicine has also stopped. But I still have to take the medicine that keeps me sleepy for now. The new "thick" milk that they gave me today has been easier for me to suck. I have been coughing less. So that is good. The nurses say I drank 60ml of milk. I have to drink more. The nurses say I am still below my birthweight. So I must keep fighting. That is what my papa keeps whispering into my ears.

Papa says that mummy has been crying plenty today. There was much noise and light from Heaven again. Papa says that it could have been mummy being very upset that she could not be with us anymore. She must have been very sad. The noises were very loud.

Papa said he felt very empty today. That there was a big hole that could not be filled. That no words could repair. He saw other mummies and daddies bringing their babies home from hospital. This made him very sad that mummy was not here. He said he was sorry that he could not be my mummy too.

Day 11: It's Easter and Father Leslie Raj from St Ignatius came to visit me today to say a blessing for me. Father Les is mummy's good friend. He prayed with me and papa to protect us all. Sister Monica and Bernadette joined us during prayers too.

I was very alert this morning. I opened my eyes wide for my papa. I even managed to cry a little. But by this afternoon, I was very sleepy. A few young aunties from America came all the way to see me this afternoon. They grew up with mummy and loved her very very much. My mama also came to hold me for the first time this afternoon. But I was too sleepy to welcome them very much. It was raining outside and very comfortable to sleep. Mummy was crying again today.

Day 11 (morning): Dr Simon Ng called papa again like he normally does in the early morning. He gives papa updates about me. Papa says that he has never been a "morning" person until now. He says that mummy used to tease him about how he could sleep so much in the morning, so I guess she is getting back at him somehow. But papa says that it is for the better.

Dr Ng is going to change my milk to a "thicker" type, so that I can swallow and breathe easier at the same time, and not choke so often. Overall, I have been a good boy overnight. Nr Ng says that he will be testing my blood again in 2 days time to see if he can reduce the medicine that he is giving me. This is the medicine that makes me so sleepy everytime. My antibiotic medicine will stop in 2 days time too. I am so looking forward to going home with papa.

A Shadow On My Shoulder

-by Brenda Penepent

There’s a shadow on my shoulder
That steals parts of my soul;
Bit by bit it takes my energy.
Never leaving me alone.
Oh, at first I tried to fight it.
I resisted it for years
Until the emptiness inside me
drove me crazy with my fears.
At times, I have embraced it;
For the comfort of my grief
Had become so familiar
I could not envision a release.
Like a cloud of empty promises
It covers me in gray.
Numbing me with sadness.
Draining color from my day.
The shadow of depression
Lurks dark upon my soul.
My wall of pain is standing tall
While I shiver in the cold.

When A Loved One Dies

-by Leon Knight

Poetry is the process
of cleansing my wound,
the tweezers
for removing
grains of sand
inbedded in my skin.

Poetry is antiseptic
painfully applied
before the wound festers
salve rubbed in
fear of infection.

Poetry is the stiching clamp
held between my teeth,
the pain killer
so I can sleep.

Poetry is acceptance
of future scars,
and aches on foggy nights.

Poetry is a way of surviving
when a loved one dies.

Day 10: As I prepare to leave hospital I try to remember my mummy. Papa says that he has so much to tell me about her. Papa says it is too painful to remember for now. I feel papa's pain. Papa is trying to be strong for me, but I can tell. He tells me when he is alone with me that he misses mummy's hugs, her touch and her company very much. Most of all he misses her love here on this earth. He says that her love from heaven is too far away to feel, no matter what other people say. That he cannot understand how she could be happy in heaven when she had told him that nothing made her happier than being here on this earth with us both. I wish I could grow up to be strong and healthy faster, so that I can help my papa get better. When I grow up, I will be a doctor so that I can try and repair my papa's broken heart.

Dr Simon Ng says that Papa should be able to bring me home early next week. I still need to take my medicines at home though, and papa will have to learn how to feed me properly. Today I was drinking 55ml of milk! Papa says that many people are looking forward to me leaving hospital because they have not been able to visit me in hospital. He says that there will be a burst of loving energy so powerful, it will rival the sun. I don't understand, but papa says I should trust him.

For mother's sake the child was dear,
and dearer was the mother for the child.
- Samuel Taylor Coleridge, English poet

IS HEAVEN IN THE YELLOW PAGES?

Mommy went to Heaven,
but I need her here today,
My tummy hurts and I need her right away.
Operator can you tell me
how to find her in this book?
Is heaven in the yellow part,
I don't know where to look.

I think my daddy needs her too,
at night I hear him cry.
I hear him call her name sometimes,
but I really don't know why.

Maybe if I call her,
she will hurry home to me.
Is Heaven very far away,
is it across the sea?
She's been gone a long time
she needs to come home now,
I really need to reach her,
but I simply don't know how.
Help me find the number please,
is it listed under "Heaven"?
I can't read these big words,
What if I dialled the number seven?
If I call my church maybe they will know.
Mommy said when we need help,
that's where we should go.

There is a sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than 10,000 tongues. They are the messengers of overwhelming grief, of deep contrition, and of unspeakable love. ~ Washington Irving

Day 10 (morning): My doctor, Dr Simon Ng, called my papa early this morning and told papa that I was again stable overnight. I like Dr Ng very much today, because he told the nurses to take out that horrid needle from my arm and leg that feeds me from a drip. Today I am drinking 50ml of milk from the bottle! Looks like I may be able to go home soon. I must keep trying hard. Papa is happy that I am coming home soon from the hospital. He is busy preparing for my homecoming. I am so sad that mummy won't be there to greet me, but I must be strong for papa. Papa misses mummy very much. I pray that Jesus is next to mummy now, because she must feel just as lonely as papa and me. Mummy dearest, we miss you very much. Why did you have to leave us behind?

Day 9 (morning): Great Friday! The kind nurses of the ICU made me my very own Easter Egg card today. My first easter egg ever!

Mummy was with me today. She gave me strength to be on my best behavior for papa's visit this morning. But she was sad. She cried many tears from heaven. Papa says that the skies were dark, and that it was raining heavily outside, and that mummy was up there crying tears of sadness and joy at the same time. He said that the thunder was mummy's way of talking to us from heaven, and that I should not be afraid. She was looking over us and protecting us. I was sad. I think papa was sad too, and I tried to cheer him up by opening my eyes for him and even smiled at him twice. I think I made him happier still when I let out a beautiful cry for him to hear. He said I had a beautiful voice that mummy would have been proud of. He said I should cry more and that this was one baby's cry that he would be happy to put up with for once. I don't understand, but I think it made him happy to say that.

Today also marked the first day when I was finally allowed to drink on my own from the bottle. I loved to suck from the warm teat and the feeling and taste of the milk was very nice. I am now drinking 45ml of milk from the bottle all by myself! Papa even got a chance to hold me and feed me from the bottle. He was very happy. I was so excited that I choked several times, and papa had to "burp" me- but papa was nervous and didn't do it very well, so he had to eventually pass me to the nurse to finish feeding me. I was amused. But papa will get better with practice. Mummy would have been proud of papa's attempts.

The doctors say that if I continue feeding from the bottle well enough, they will take away the painful needle that they keep sticking into my hands and feet for the drip that has been feeding me. Then if I can continue to be on my best behavior, they may even release me by early next week! Yeah!

I think that although papa has been feeling very empty without mummy, that I made him happier today. Please pray for mummy today, and ask God to hug mummy for us all. She must be feeling lonely without us in heaven. We miss her so much on this Good Friday.

Day 9: Dr Simon Ng called Papa early this morning to tell him that I had been a good boy overnight, stable, abit more active and drinking more milk! Dr Ng says that if I can continue to improve like this, then he will try and take that aweful tube from my throat and start feeding me through the bottle by early next week. He needs to start teaching Papa how to change my diapers & bathe me soon too!

Day 8 (afternoon): Papa came to see me today at about 4.20pm. Papa said that I was a little quiet at the start of his visit, but that's because I was in deep sleep & spending some quiet time with mummy. The nurses say I have been stable through the morning. My breathing was also regular and no further oxygen was required.

Dr Simon Ng was concerned that I have been too quiet and everyone wants me to cry! So there was some discussion among the doctors to reduce the medicine that I take that makes me feel sleepy. But my body must behave itself, otherwise they will increase the medicine again.

I love milk! Dr Ng says that they are gradually giving me more milk to drink. Today I am up to 35ml /3hrs. Dr Ng says that once I am able to drink 50ml of milk, they will allow me to suck milk from a bottle! Then I can say goodbye to the yucky tube that is sticking into my throat. So far he says my sucking and swallowing are a little weak at the moment, and I am finding it hard to breathe and swallow at the same time. I will train up very hard to do this well, otherwise they won't allow me to go home to papa.

Papa went home at about 6pm today, and I was feeling so lonely, though papa did say that mummy was with me all the time. I tried yawning, stretching and even opening my eyes to get his attention, hoping he would stay a little longer. In the end, all the activity just made me more hungry again, and I started hiccupping and couldn't stop! In the end, the nurse came to change my diapers and feed me more milk. I will see papa again tomorrow.

Day 8 (morning): This morning's visit saw Nurse Joanne on duty. She has also been very kind and loving towards Evan, giving him frequent massages and talking to him as much as she can. The little one's breathing has been more stable overnight, with no oxygen supplements required.
His milk feeds through the gastric tube have also been steadily increasing. They have raised the volume to 35ml today. They have also started training him to suck from the teat of the milk bottle. He will have to slowly learn how to suck milk and breath at the same time without choking or sucking it into his lungs.

He continues to be on the quiet side, and has not had a hearty cry yet. Although Nurse Joanne says that he did make a singular crying sound, the first she has heard herself from him, during feeding time.

"Mommy Darling,
We'll be alright, we'll be good.
Promise.
When you see us together,
Send us a kiss in the wind,
And a song in our hearts,
Whisper to us, "I love you",
We'll know it's you.
Always.
We'll be waiting. Wait for us too.
We love you so much. "

-Love Evan Gabriel & papa Colin

DAY 7: Today has seen Evan more active and responsive than he has ever been. This afternoon's visit to the hospital saw his oxygen tent removed once again (good news), and his feeds increasing to 30ml of milk/ 3hrs via the gastric feeding tube.

Dr Simon Ng reported that the 2nd repeat blood test that was done this morning, was negative for infections, so that was re-assuring. Evan however, continues to be given a cocktail of antibiotics to be on the safe side.

The afternoon visit today was shorter than I would have liked. I had a late start to the hospital and had to rush off again to the 6pm Mass at St Ignatius. [It was a Mass of Special Intentions for Frances and Evan. This was followed by a short service at St Mary of the Angels Church, at the columbarium niche for Frances (niche #3234).] Granny accompanied me to the hospital and prayed in the hospital chapel while I went up to visit Evan. I had to check to see if the batteries had run out on the MP3 player! (for those interested, I am using a borrowed Apple Shuffle).

It's getting late, and my mind is getting lazy, so I think that's about all I will say for today. Stay tuned for Day8's installment. I would like to thank all of you out there reading this for the kind comments and thoughts that you have shared with us, and the myriad ways that you have found to express your love for Frances, Evan and myself. Thank you from the bottom of our collective hearts.

I Miss My Mummy
(Adapted from “What makes a Mother”)

I thought of my mummy and closed my eyes
And prayed to God today
“I miss my mummy.”
And I know I heard Him say
Your mummy’s love stays with you always
But, God, can my mummy love me
When she is not here with me?

Yes, she can he replied
With confidence in his voice
I give mummy to every baby
When they leave it is not their choice
Some I send for a lifetime
And others for the day
Some I send to nurture the baby in their womb
But there’s no need to stay

I just don’t understand this God
I want my mummy here

He took a breath
And cleared his throat
And then I saw a tear…
I wish I could show you
What your mummy is doing today
If you could see your mommy smile
With other mummies and say
“We go to earth to learn our lessons
of love and life and fear
I have grown to love my baby so much
Over the time he lives in my womb
I got to come straight to heaven
To be surrounded by angels
Who remind me of my beloved baby Evan
I feel so lucky to have a baby whom I love so much
I learned my lessons very quickly
My baby set me free

I miss my baby oh so much
But I visit him each day
When he goes to sleep
On his pillows where I lay
I stroke his hair and kiss his cheek
And whisper in his ear
Baby don’t be sad today
I’m your mummy and I am here”

So you see my dear sweet one
Your mummy is okay
Your mummy is here in My home
But her love for you will always stay
She’ll wait for you with Me
Until your lessons are through
And on the day you come home
She’ll be at the gates for you

So now you see
Your mummy loves you so
You can feel it in your heart
It’s the love she had so much of
Right from the very start
Though some on earth
May not realize
Until their time is done
Remember she gave you all her love
And know that you have
A Special Mom
- kindly contributed by Amanda from London

DAY 7: Evan's body temperature was stable today, though the neonatologist, Dr Simon Ng, did say that the results of the previous day's blood test did reveal the presence of an infection of some sort ("Gram +ve cocci"). Dr Ng is uncertain of the source of the infection, and speculates that it may either be a skin infection or something that is circulating in the blood. A repeat blood test has been carried out today to learn more.

Evan's breathing has also not been as stable as we would like it to be. He was put back on the oxygen tent last night as there were episodes of shallow breathing. He is not in immediate danger, but this is obviously a factor that will determine if they let him out of the ICU anytime soon.

He continues to lap up the milk that is being fed to him in increasing amounts. As of this morning, his milk volume has been increased to 24-27ml every 3 hrs. He does continue to require the gastric tube for feeds at the moment. This is in part due to his erratic breathing performance, which they do not want to overload should he be stimulated to swallow milk at the same time.

I did manage to cradle him again this morning, and he did open his eyes for a short while after his feed. We have also introduced background music for Evan via an MP3 player and some external speakers. The music includes much of Frances' church music and singing, as well as some of the Mozart music that was being played to him while she was still pregnant.

Today also marks the sad departure of Nurse Shirley Xie, who has come to love Evan as one of her own. She leaves for a private nursing career. Evan will miss her much.

Day 6:
Significant Milestone... Evan has shown good improvements today. The most significant of which has been his ability to finally breathe on his own accord. The oxygen tent was finally removed this afternoon.

The nurses reported that he seems to LOVE his baths! According to Nurse Shirley Xie, Evan smiled at her again and opened his eyes during bath time. He seems to like her very much. He has been more active than ever before, with arms flailing and legs stretching more frequently. The only thing he has not shown us is his VOICE! Although he has been attempting to squeak occassionally, he has not revealed his true vocal potential yet. This is one baby cry that I will gladly put up with. Brave words that I will probably be forced to eat in a few months time.

Daddy finally gets to hold Evan in his arms...the feeling was indescribable, to finally get to hold the little tyke in my arms, was an emotional and almost unfamiliar few moments of special serenity amid the madness that has ensued over the past few days...

Evan's next milestone will be to see if he can be slowly weaned off the overhead feeding drip that is currently needled into his limbs. The ultimate goal would be to progress on to bottle feeding. Formula milk (S26?) has slowly been introduced to his stomach via the gastric feeding tube that goes into his throat. He seems to be tolerating this well. Currently, he is being fed 21ml of milk every 3 hrs.

The physical tremors that dogged him over the first few days have continued to stay away.
Let us hope that tomorrow brings more improvements.

Day 5: Daddy visited me today, and I was hiccupping! Today, I had more milk added to my feed. It has increased from 5ml, to 10ml to today's 18ml, every 3 hrs. Yum yum. Mummy loved to drink milk, so I guess I must be taking after her. Daddy always used to tease mum by calling her a cow. Although, I don't understand that, cos cows don't drink milk! I was feeling more lively today, stretching and moving my arms all over the place and I was yawning quite alot too. They finally took me off my nasal airway, and replaced it with an oxygen tent over my head. The nurse said that I was getting 30% oxygen at the moment, down from 40% earlier.

I was a good boy today, the nurses said I was trying very hard, and that my body temperature was stable, AND that there were no more tremors today! But the doctor said that I still needed my medication for the time being, which is making me very sleepy and is making me yawn so much. I hate it, but I am sure they are doing this for my own good.

DAY 4: BABY SMILES! The good news for today is that Evan was alot more active than yesterday. He was moving his limbs more, and according to Nurse Xie, when she was bathing him, he actually opened his eyes for her and managed a coy smile for a moment! Evan even tried making a noise that sounded like a faint cry, according to Nurse Xie. This, if true, is certainly encouraging and the first vocal sounds he has made since entering the neonatal ICU.
(Significance: Very positive indeed!)

When I visited him at 5pm today, he was alot more active than usual, responding to touch and sounds more than yesterday. This could be due to the fact that his usual medication for suppressing his tremors has been changed from an intravenous route of administration to a liquid oral form of administration through the gastric tube. This would presumably mean the medication has a less profound effect than previously.
(Significance: Moderately postive)


His tremors have reduced significantly today which is always a good sign. If he can continue to overcome his tremors, perhaps we can see a gradual reduction in the dosage of his suppressant drugs, and an improvement in his liveliness!
(Signifcance: Very positive indeed!)

Even though Evan continues to breath spontaneously on his own, he has had to have his breathing assisted with an external nasal oxygen-ventilator. To compensate for his shallow breathing, a positive pressure of oxygen has been deemed necessary for the time being.
(Significance: mildly negative)

He also continues to have his cocktail of medication of Phenobarbitone (anti convulsant drug), and some antibiotics to prevent opportunistic infections. His body temperature is a little unstable, fluctuating between 35 deg centigrade and 38 deg centigrade. Dr Simon Ng (Evan's neonatologist) does not believe this to be an infection, but rather a period of innate temperature instability as his young body tries to cope with heat regulation. However, nothing is being left to chance and so antibiotics have been administered as a precaution.
(Significance: moderately negative)

I will be trying to post some of the photos of Evan as we go along, so that you can continue to visualise our little angel as he progresses. So watch this space! -CO